Why

As a parent of young children, I am asked this question numerous times each day. Sometimes, it is an easy answer, but at others, it requires a more heartfelt, prayerful response to their inquisitive "whys".

About a week ago, Elias fell asleep in my arms, and I was overwhelmed with the seriousness, the sadness, and the heaviness of this. I had so many questions for my heavenly Father, and He answered that night with overwhelming peace.

You know, I never imagined being here, in an ICU following our son's brain surgery, and now that we are, I don't want to question why. I want to look ahead to Elias being healed and God getting all the praise.

The truth is, I really cannot grasp the why right now. Elias was screaming through his pain this evening, and he looked right over to me and asked, "Why did I have to do this?!" Of course, we had to do "this" for his well-being, but honestly, I know there has to be a bigger purpose than that.

In Romans 8, we are reminded that the sufferings of this present time aren't worth comparing to the glory that God will reveal in us. The Lord has a bigger answer to the question, "Why?" I know He wants us to bring our hearts to Him, pour out our prayers and our big questions, and give Him time to answer. Why? Because He is still God, and He is still good.

Turning Moments into Memories

When we received the news last week that Elias was going to have brain surgery on June 6th, I knew what I wanted to do in the two weeks we have leading up to it. I knew we had to have pictures, lots of fun, and tons of memories. I have been determined since signing consent forms to make his summer memorable for him (and us) considering the rest of it will be quite trying. I want him to do things he hasn't before, and I hope to let him do things he cannot over the next few months.

My heart is already filled with thankfulness that, in just a few days, we have done some of the things I imagined for him. You know, hearing a certain kind of news shouldn't dictate living our lives with intention and with purpose, but it sure has motivated me to do so. I had no clue this was coming, and while we never do, I have realized that each day being a gift is completely true.

God has given us both a possible answer with surgery and time to prepare for it, but we have known all along that life and what was to come has never been in our control. He has given us another day to rest in Him and to enjoy His glory. Isn't that what every single day should look like?!

In less than a week, Elias has had his five year pictures taken, found out he would be having a baby brother, ran through the Rivers of Tennessee fountains, chowed down on chicken and cheese crepes from the Farmer's Market, experienced the Nashville Public Library and its amazing Storytime, went bowling and had a "lucky" green ball, learned to ride a bike without training wheels, ate blue birthday cake kettle corn, and received the news that he would be having surgery. This sweet, wild child of ours is having a big summer. I am blessed to be a part of it, and because these moments have been so special to me, I wanted to share them.

Heavy Burdens

It still isn't easy to say aloud.  Two days ago, we met with the neurosurgeon to review Elias' MRIs.  Thankfully, the spine MRI was clear, but we still had to face the fact that he has a Chiari brain malformation AND central sleep apnea.  He explained to us that the only option for Elias is a Chiari decompression. We knew it could happen, but when it actually came to signing consent forms for a brain surgery, it became very heavy.

Can I be honest?  I don't want to go through this.  I don't want to watch our son go through a surgery like this.  I don't want to be in a hospital or have him endure the pain.  However, the burdens he has carried in his five short years of life (with having sleep apnea, waking up constantly throughout the night, and always being sick, ill, and angry) makes it obvious that he deserves a chance for things to be better.  It's a difficult thing, but it's the right thing.

God made that perfectly clear through His overwhelming peace last week.  The Lord had prepared our hearts for this.  Why they feel so heavy now isn't that surprising.  The surgery will take place on June 6th.  We are beginning to make preparations for it.  We know that he will be in surgery around 3-4 hours, in ICU for 1-2 days, in a regular room for 1-2 days, at home carefully monitored for 2 weeks, no physical activity or swimming for 6 weeks, and should be ready for most anything in 6 months.

Obviously, our schedules have to change, our lives are being altered a bit, and our son is going to undergo a big thing.  It is just what God has in store for our family.  Life seems to be easy and light at times, and at others, it is tough and heavy to bear.  I am incredibly grateful that Jesus says His burden is light.  He tells us to come to Him (Matthew 11:28-30).  We will lay it down at His feet for rest.  I keep imagining the magnitude of God's love for our son and how He sent His own Son to die for ours (and us), and I am immediately comforted by His Spirit.

Will you pray for our family and lift this burden to the Lord on our behalf?  Specifically, pray for Elias' surgery to be successful, recovery to be swift, no complications will arise, and for peace for his precious heart and mind.  Please pray that his brothers (at only 7 and 8) will act with and be given compassion, understanding, and love.  Pray that we, as his parents, will be patient, peaceful, and prepared for what comes our way.


I wrote about Elias' diagnosis here:
http://jennarjohnson.blogspot.com/2017/05/perfect-peace.html

What is a Chiari malformation?  Chiari Malformation Type I (CM) is a neurological disorder where part of the brain, the cerebellum (or more specifically the cerebellar tonsils), descends out of the skull into the spinal area. This results in compression of parts of the brain and spinal cord, and disrupts the normal flow of cerebrospinal fluid.

How is it treated?  If the symptoms aren't severe, doctors may recommend just monitoring the situation with regular MRI's and treating the symptoms individually. However, if symptoms are interfering with quality of life, are getting worse, or if the nervous system is being impaired, doctors may recommend surgery. The most common surgical treatment, performed by a neurosurgeon, is known as decompression surgery.

What is surgery like? Decompression surgery is a general term used to refer to any of a number of variations on the same basic procedure. The goal of the surgery is to create more space around the cerebellar tonsils and restore the normal flow of CSF. The procedure involves removing a piece of the skull in the back of the head near the bottom (craniectomy). Often part of the top one or two vertebra are also removed (laminectomy). At this point, depending on the individual case and doctor, some doctors will also open the covering of the brain, the dura, and sew a patch in to make it larger (duraplasty). 

For more information about Chiari brain malformations and Decompression surgery:
http://www.conquerchiari.org/education/chiari-faqs.html

Follow-Up Miracle

On Monday, April 18th, Samuel had his follow up visit with Dr. Kelly, his plastic surgeon at Vanderbilt, just 5 short days following his surgery.  The doctor's first words were, "He's fine."  What a relief!  The "tag" on Samuel's neck proved to be non-cancerous and as suspected ran deeply.  It was through the muscles of Samuel's neck and connected to tissue, but this did not seem to cause any need for alarm.  The surgery lasted all of 20 minutes. 

What did surprise us, however, was the explanation of what this "skin tag" actually was.  Apparently, when babies' ears are forming in the womb, they do so in 6 parts, and somehow, in God's providence, one of Samuel's parts did not form exactly where it should have.  It formed into the fold of his neck.  I know you are wondering how this is possible (as we did), but we were comforted with the knowledge that Samuel passed his hearing test as an infant.  His ear shows no signs of malformation or discomfort.  It is simply a miracle as God must have intended.

As my husband beautifully wrote after learning this news, our Lord knew that Samuel would one day need to hear the Gospel, and how fitting it is that it was in God's hands as He formed this little one within my womb, despite the "loss" of one of the six parts of his ear, God knew Samuel would be able to hear!   

Surgery Day!

After his birth, I noticed a small "skin tag" on Samuel's neck. At the time, the doctors believed we needed to wait until he was at least 6 months old to operate and remove it. At his 6 month well visit with the pediatrician, we set up an appointment to see a plastic surgeon at Vanderbilt. Ultrasounds showed very little, and the surgeon said that removing it would be the only way for him to know what exactly the mass was.

We have been waiting since February for our insurance to approve the surgery. After all the waiting, the process has actually happened very quickly! The surgery was approved and scheduled all in the same week! Praise God! Right on time, the spot had some noticeable changes. It had hardened and gotten a little bit larger. It never seemed to bother Samuel, though.  Others noticed, however, and it bothered us at times to hear the comments people would make regarding something our child was born with, but God knew what He has in store for Samuel Levi. 

Yesterday (April 13, 2011) was surgery day. He did amazing! Surgery was scheduled at noon, so he hadn't eaten for 12 hours. He was awaken at 11:30 p.m. on Tuesday night to eat a jar of banana/orange medley (in the dark).  He had his last bottle of milk at 3:30 a.m. on Wednesday morning. The waiting room was hard, as they ran a bit behind schedule, and he was getting very irritated.  Once we were called back, we dressed him in the cutest little pajamas, and answered a million of the same questions.  We continued to wait for the OR to open for him.  We said our goodbyes when the surgeon arrived.  From what we understand, they put a breathing tube in, put him to sleep, ran an i.v. through his left foot, and removed the mass. Recovery was difficult. He was not soothed easily. In fact, upon waking, he needed two doses of pain medicine, but was quickly relieved by a nap in his Daddy's arms. Once he ate (4 oz of Pedialyte), we were allowed to head home. We learned that the spot WAS deeper than originally suspected and was connected to the muscle.

For now,  he is on antibiotics, pain meds, and TLC for the next 5 days. He returns for a follow-up visit with the pediatric plastic surgeon on Monday, April 18th. Samuel is resting very well, and he has even crawled around and played with his "Get Well Soon" balloon from his aunt, Jessica.  Thankfully, Jessica and Mom were able to stay with Daniel while we were at the Children's Hospital.  Jessica even got us supper!  We are so blessed with such wonderful family and friends.  Thank you for your continued prayers. We didn't publicize this because we know that there are children in much more serious need of prayer, but we appreciate so much your concern for our sweet boy!

Here are some pictures from our day:

The night before surgery...

Watching Elmo with his big brother.

Here is the "mass" on his neck,

in case you've never seen it.

In the holding room, prior to surgery.

Aren't those pajamas precious?!

He was so hungry and sleepy.

Look how small he looked in that hospital bed!

Getting some play time in before surgery.

Last night, 6-7 hours after surgery.

His eyes are red as a side effect from anesthesia.

His incision is glued, stitched, and covered.

HOWEVER, he was ready for applesauce!